Autism Diagnosis and Rediagnosis: Do Labels Matter?

Posted on by Astrid

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

Christmas Crafting!

Posted on by Astrid

I have a confession to make: this is my first year ever actually doing Christmas decorations. I used to like them as a child. Particularly though, I liked fidgeting with the little wooden snowmen and angels and Santas in the Christmas tree.

When I left my parental home to go into independence training, it never occurred to me to decorate for the holidays. Besides, I was back with my parents over Christmas. I never celebrated Christmas in my independent living student accommodation and once in the mental hospital, I hated decorations with a passion. During my first year there, I even ripped them all off. I don’t think my husband cared much for decorations during the years I lived with him either. Then when I went into the care facility, for the first two years, apparently I wasn’t feeling stable enough to decorate my room. In fact, I never quite considered it “my room”. Now I sort of do. I consider that a major win, since it means I’m beginning to feel safe in the care facility. Maybe the fact that I started decorating for Christmas, has some symbolic meaning.

I don’t have a lot of decorations. I have a store-bought, simple, ready-made Christmas tree and a couple of smaller decorations here and there. The point is I have something though.

In addition, this is probably the first year I’ve genuinely crafted something for Christmas too. I mean, during the year I did card making (around eight to nine years ago), I did create Christmas cards too, but these were so ugly a five-year-old could have made them. This year, I actually added my very own home-crafted piece to my Christmas decor.

First, several weeks ago, I created a cookie cutter polymer clay Christmas tree charm. I fully intended on finishing it off with gold Fimo Liquid after adding the balls, but decided after it got out of the oven that I didn’t really like the way it turned out after all. I don’t have a picture for this reason.

Then, last week, I found out how to make an actual three-dimensional Christmas tree. I made it using the same color (Fimo soft Emerald) I’d used for the cookie cutter charm. It’s a shame Fimo doesn’t offer Christmas tree green! I added two colors of balls (Indian Red and Metallic Gold) and added a Metallic Gold star for its top.

Later that week, one of my staff told me about a project she’d been working on in which she’d used a metal ring, a part of a tree trunk, a string of lights and some washi tape to create a Christmas decoration. I thought to myself, how fun would it be to glue my polymer clay Christmas tree onto the tree trunk and work from there.

On Friday, fully having the tree trunk and metal ring project in mind, I created a polymer clay snowman too. That was a bit harder, because it had to be smaller than the Christmas tree and of course the snowman includes more intricate features.

On Saturday, when the staff who’d talked about the tree trunk project came by, she showed me the tree trunk. I think here’s where my concept development is a bit lacking, as I had absolutely no idea how huge a tree trunk would be. In my mind, I had imagined a small piece of wood, but it was the actual trunk of an actual, large tree. Yes, she’d said a tree trunk, right? Needless to say my Christmas tree, which isn’t even 10cm high or 5cm wide, would be invisible when used on this trunk.

Instead of the trunk, we decided to use a small piece of cardboard to stick the Christmas tree and snowman onto. I am not sure how well they will remain secured, as I’ve heard mixed messages about glue and polymer clay. The fake snow we used to spread around the tree and snowman, also hardly stuck at all, but for now, it’s in its place.

We decided to use a much smaller ring than the one my staff had had in mind, because of course the large ring would again drown out my polymer clay sculptures. Since the string of lights was meant for the large ring, we couldn’t use that, but we could use some mini Christmas balls and washi tape.

I couldn’t do much in creating this final project, as most of the parts had to be glued together using a glue gun, but I don’t mind. I like that I at least did the polymer clay crafting.

Do you usually do any Christmas-related crafting?

Linking up with Inspire Me Monday and #LifeThisWeek.

#WeekendCoffeeShare (December 18, 2021)

Posted on by Astrid

Hi everyone on this cloudy Saturday afternoon. It’s been a few weeks since I joined in with #WeekendCoffeeShare, so I thought I’d link up again. As I’m starting this post, I haven’t yet had my afternoon coffee. I’m going to take a break for that when I finish this paragraph, so if you’d like a cup yourself, I can get you one too. We have an assortment of cookies and may still have a few mini Mars candy bars left too. Let’s have a cup of coffee and let’s talk.

If we were having coffee, first I’d tell you I had a good talk with the behavior specialist on Monday. We discussed a few things, including my desire to be made aware of the contents of the paperwork that went to the authorities deciding on my one-on-one. Those visiting just for the Coffee Share won’t know this, but it got approved for two more years to come, yay! However, I’d still like to know what was said about me, just because it’s about me.

We also discussed my food issues, for which a referral has finally been made to the dietitian. I really hope the dietitian can help me get some clarity on what (not) to eat during the day, because currently every opportunity to eat is an opportunity for inner conflict and chaos. Finally, we discussed my wish for a physical day planner using Braille-labeled activity cards to choose from.

If we were having coffee, I’d tell you that the blindness agency came by on Thursday to lend us a Braille label writer and several pairs of colored NoIR filter glasses (special sunglasses for those with low vision). I will be trying out the sunglasses over the coming weeks and will be using the label writer to type up the aforementioned activity cards.

If we were having coffee, I’d moan about my adaptive footwear again. Shoe Guy finally decided my orthopedic shoes aren’t fitting and can’t be made fitting, so he’s going to make me new ones all over again. He finally brought back my new walking shoes, that my husband bought me a few months ago. Now though, my left arch support insole got a bump in it that I can’t get out of it. Bottom line: I still can’t walk comfortably! Ugh!

If we were having coffee, I’d end on a positive note by telling you about all the creative work I’ve been doing over the past couple of days. I made some lovely polymer clay charms on Thursday based on tutorials I saw on YouTube. Can you guess what the below charm is supposed to be? Facebook’s automatic alt text guessed it correctly!

I also made a Christmas tree and snowman out of polymer clay. This evening, I’m going to add both to a larger mixed media Christmas ornament. Lastly, I finally decided to save my scrap clay rather than throw it away. I made some randomly-colored beads out of it yesterday.

How have you been?

Dear 2021…

Posted on by Astrid

Twenty-twenty won
That’s how you begun
For good or for bad
All that we had
Back then, you would continue
And you did

For most, it was probably a sad thing. COVID wasn’t over with. In fact, it’s likely here to stay.

For me, it was a good thing though. At the end of 2020, I was approved for the right level of one-on-one support for a year. I just found out last week that it got approved for another two years to come. I am so relieved! For me, I am more than happy that twenty-twenty won. At least in this respect.

This piece was written for Friday Writings, for which the optional prompt this week is “Dear 2021…”.

Friends and Buddies

Posted on by Astrid

This week’s topic for Throwback Thursday is friendship. I was never really good at making friends. I still don’t have any real friends other than my husband. I mean, of course I could consider some of my fellow clients “friends”, but our relationship isn’t as deep as that of normal adult friendships.

In early childhood, I did have one friend. Her name was Kim and we used to make mud castles together. Or anything out of sand and water really. Kim’s last name translates to “peat” and my father used to jokingly call her “Kim Mud” rather than “Kim Peat”.

When I went to the special school for the visually impaired at the age of five, I started in a first grade class despite being of Kindergarten age. All girls in my class were at least a year older than me and they enjoyed “babysitting” me. In exchange, for the next three years, I’d help them with their schoolwork.

By the age of nine, I transferred to a different school for the blind. Though I did have a friend there, I was also an outcast and got heavily bullied.

My best time socially was my one year at the special ed secondary school for the blind. I had one good friend there, but also got along pretty well with everyone else in my class and most kids in my school in general.

All that changed when I entered mainstream high school at the age of thirteen. Within a month, everyone had formed cliques except for me. A few months later, my favorite clique took me under their wing and pretended to be my friends, only to drop me again when they’d had enough of me. I was friendless for the remainder of the six-year program. I didn’t really care. Or maybe I did, but I was determined to show my parents and teachers that I could earn a mainstream high level high school diploma. And I did. Not that I use it for anything now, but oh well.

Another topic mentioned in the Throwback Thursday post title at least is buddies. This reminds me of the autistic student buddy program I was part of during my two months of attending university. This program assigned a psychology student volunteer buddy to an autistic student to help the autistic with planning their coursework or other activities related to their studies. It worked in theory, but the catch was that these buddies were volunteers helping only with certain things for one or two hours a week at most. At the time, you couldn’t get paid support workers for assistance related to college or university studies, as the reasoning was that if you could be a student in college or uni, you should be able to do the planning and related tasks yourself. Needless to say my buddy got overwhelmed within a week. I feel intensely sorry for her.

The reason I mention this, besides it being in the post title, is the fact that I realize I struggle to maintain a distinction between social and professional relationships and, with the buddy, things got even muddier. I mean, friendships are supposed to be reciprocal, while professional relationships are not. For this reason, I am allowed to unload my shit to a professional without needing to listen to theirs. Professionals, however, get paid, while friends don’t. With the buddy, the situation got complicated, in that my fellow students called on my buddy to calm me when I was in a meltdown. That clearly wasn’t her role.

This thing about lack of reciprocity, however, also probably killed off that mainstream high school friendship I pretended to have. I don’t blame myself entirely though: my so-called “friends” also felt obligated to hang out with me out of pity, and that’s never a good reason to be someone’s friend.

My Perfect Lover

Posted on by Astrid

I think my husband is perfect. He is the ever-most-beautifullest, ever-most-lovablest
person in the world. That’s why I chose him as my lover.

My husband and I can finish each other’s sentences and it doesn’t get annoying. Or sometimes it does. Then we say “banana spider” and the other knows we’ve bored them out of their mind.

We joke that, when we get old and suffer with dementia, only the two of us will still understand each other, since we have so many special phrases and words between the two of us. At least I hope we’ll have something to laugh at ourselves about then.

Honestly, it’s too bad that my blog is in English and my husband and I communicate primarily in Dutch. After all, our expressions sound even better (or should I say even weirder?) when written or spoken in our native language.

Written for Twiglet #257: “Even Better” and FOWC: “Lover”.

Hobbies I Could Turn Into Christmas Gifts

Posted on by Astrid

Hi everyone. As regular readers of this blog know, I have a lot of eBooks on journaling. One of them is a collection of 31 Christmas-related journaling prompts and one of its prompts is about turning hobbies into Christmas gifts. The prompt asks us to think of ten hobbies that could be turned into Christmas presents. They don’t have to be physical presents. In fact, the explanation behind the prompt was about a little boy coming to greet Jesus and, rather than bringing riches like gold or myrrh, he brought his drums and played little Jesus a song. Today, I am going to share some of my passions that I could turn into Christmas gifts. I am pretty sure I won’t make it to ten, but that’s okay.

1. Storytelling. Some kind words can mean the world to someone. I am not too much of a wordsmith in terms of poetry or fiction, but I can definitely share some of my positive thoughts with someone I care about this holiday season.

2. Soap making. Okay, I can’t find my Christmas tree mold as I write this, but I could still create a soap in festive colors. After all, I do have gold and red mica powders.

3. Aromatherapy. Related to the above one, I could obviously add a Christmassy scent to my soap or other DIY bath and body care product. I have a ton of seasonal essential oils, including white fir, cinnamon and orange. I also am pretty sure I have a Christmas tree fragrance oil.

4. Polymer clay. Of course. I recently created a polymer clay Christmas tree and am going to buy white Fimo soon so that I can create a snowman too. I have a few Christmas-related cutters, but I prefer creating sculptures.

5. Jewelry-making. I don’t have that many Christmas-colored jewelry-making supplies on hand right now, but if I wanted to, I could purchase them. I can definitely make a holiday-themed keychain or bracelet. If I am going to use my polymer clay to make jewelry with, I do have Christmassy colors.

6. Reading. I could read my fellow clients a Christmas-related children’s story.

7. Baking and cooking. I am not a great cook or baker, but I could with some help from the staff definitely whip up some seasonal treat. I love looking up recipes.

Well, I can’t think of anything else right now, but I am pretty content with how I did on this list.

How could you turn a hobby of yours into a Christmas gift?

Keep Calm and Carry On Linking Sunday

This Is “Profound Autism”?: Reframing the Discussion Around Complex Care Needs

Posted on by Astrid

A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.

Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.

I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.

I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.

I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.

That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.

Gratitude List (December 10, 2021) #TToT

Posted on by Astrid

Hi all on this cold but lovely Friday. Today, I’m doing a gratitude post, just because I can. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my mammogram came back all clear. I still suffer with slight discomfort, but I feel comforted knowing it’s nothing serious.

2. I am grateful I got my COVID booster shot yesterday and I didn’t even suffer a sore arm. Well, not that arm, at least. All my limbs were stiff this morning, except for the arm I’d been jabbed in.

3. I am grateful my one-on-one support got approved again. Not only that, but it got approved for two years this time! I am so intensely happy, but still can hardly believe it.

4. I am grateful for crafty inspiration. I am currently working on a mixed media Christmas project which includes polymer clay.

5. I am grateful my husband was able to sort out my health insurance for next year. Here in the Netherlands, basic insurance is mandatory but you get to pick your own private insurance company. The government decides what is covered under basic insurance but insurers get to fill in the fine print and decide which care providers (eg. doctors, hospitals, etc.) to contract with. In addition, they get to offer additional coverage packages. For several reasons, my current health insurance was no longer fitting for me, so I decided to change insurers, but needed my husband to help me make the actual switch. I am so glad it seems to be sorted now.

6. I am grateful we still have pepernoten. That’s a typical St. Nicholas (December 5th) treat and I love it!

7. I am grateful that I was able to have quite varied lunches over the week and most were relatively healthy too. I had Turkish pizza on Wednesday, which was my unhealthy lunch of the week. Yesterday, I had a boiled egg on bread and today, I had a toasted cheese sandwich. On Monday and Tuesday, I think I had my usual lunch of a peanut butter sandwich, which I don’t really like.

8. I am grateful I was able to clean my essential oil diffuser (the new one) yesterday and that it was hardly dirty at all.

9. I am grateful for my Christmas tree and its lights. Its lights were almost out this afternoon, so initially I thought its batteries were empty. That would’ve been highly annoying, since I had only put the batteries in last week. Thankfully, switching the position of the batteries did the trick of turning the lights on again.

10. I am grateful I have been sleeping really well over the past several nights. Last week, I had a few rough nights, but this week is much better.

It was harder than I expected to actually make it to ten things of thankful. I mean, I am overjoyed at my one-on-one having been approved, but that makes for only one item on the list. However, I am trying my best to remind myself that even the little things in life that I am grateful for, can and should make it onto this list.

Describing My Favorite Place

Posted on by Astrid

For her first writing prompt, Ebar asks us to describe our favorite place using all five senses. I was thinking of sharing something about my favorite place in the entire world just yesterday. As someone who doesn’t feel she belongs anywhere, the concept of a favorite place is hard to comprehend. However, right now, my favorite place in the entire world is where I am at this very moment: my room in the care home. Below, let me describe it using my five senses.

I can see the light being on. Though I cannot usually see the colored LEDs on my essential oil diffuser due to being blind, I know they are there and appreciate them. I can see through the windows. Well, not right now as it’s dark outside and the curtains are drawn, but during the day, I can.

I can listen to the sound of soothing music on my music pillow, or to my text-to-speech software on my computer or iPhone through my headphones. I can also sometimes hear the door behind which the laundry and trash cans are stored slam shut right below my room. I don’t like that sound, but the staff are looking into the technical people doing something about the door being made less loud. I can hear the sounds of other clients and staff elsewhere in the home. I may not always like those sounds either, but they are the sounds of my room. I was almost going to say they are the sounds of home, but calling my room “home” just feels like it’s a step too far as of yet.

I can feel the fabric of the chair I’m sitting on. I can feel the characteristic floor my feet touch. When I’m in my bed, I can feel the comfort of my weighted blanket and my stuffed animals.

I can smell the scent of whichever essential oil blend I choose to put into my diffuser when I want to. Lastly, I can taste the meal delivery service meals in my mouth. I can select from their menu and, though the meals aren’t great and there’s a particular lack of variety, some are quite delicious. I’m going to pretend we have lasagne for the sake of this post.

What’s your favorite place like?